Last year we celebrated Easter in Windy City Afghanistan. We didn’t know then that a few days after that lovely morning, we would be mourning loss after loss of friends murdered, cancer, hearts too broken to be fixed, and accidents while on vacation.
It’s no secret I’m going into the month of April with a heavy heart, knowing that one year anniversaries are coming up and will keep coming for the rest of the year. John. Lisa. Sejia. Bekha. Werner. Karina.
But, Easter. Resurrection Sunday. The reason, the only reason, that we are not smothered by grief, is knowing that every one of our friends have loved Jesus well and the mothers of the children in that list say every time “Better is one day in your courts than thousands elsewhere” and my girl is dancing with Jesus.
So we celebrate. We celebrate Jesus’ triumph over death. We celebrate the joy of spring, of new beginnings. We celebrate being together, with a sharper knowledge that each day together is a blessing not to be taken for granted.
Because He lives, I can face tomorrow,
Because He lives, all fear is gone;
Because I know He holds the future,
And life is worth the living,
Just because He lives!
— Bill Gaither
Our life is not typical, not by a long shot. We don’t always live in America. We don’t always live in Afghanistan though either. We are followers of Jesus from the west, living among devout Muslims in Central Asia. Both the Rocky Mountains and the Hindu Kush are visible from our living room windows.
We have three kids and one of them has an extra chromosome.
It can get confusing at times living in two places at once. Sometimes I rummage in my kitchen for ten minutes before I remember that I do indeed have a pastry blender, but it’s in Asia.
But some things are constant, no matter what continent we live on. In honor of World Down Syndrome Day (3/21 for the third chromosome on the 21st) here are some things we have because we have Jack Jack.
1) We have a team. Speech therapist, special ed teachers and aides, and a kindergarten teacher named Miss Bliss (could there be a more perfect name for a kindergarten teacher??) who spend their days thinking of ways to help Jack Jack learn and communicate the very best he can.
And we can take them with us! Our speech therapist has offered to do sessions over Skype, our special ed teacher posts schooling ideas to a Pinterest board and my Facebook friends lend support for potty training and the very best iPad apps for reading. Every where we go we have a team of people cheering Jack Jack on.
2) We have family. In the States we are surrounded by grandparents, aunts, uncles and cousins and a church family that will blow your socks off. They know we are weird and don’t laugh if I announce that the tap water here is safe to drink. They give Jack Jack every opportunity to be a part of their lives and to join them in what they are doing. Our friend Wayne knows that if Jack Jack is coming over, he’d better be ready to feed the horse and check the chicken house for eggs because Jack Jack comes ready to work.
In Afghanistan we have foreigner friends who become aunties and uncles to my kids. Friends who enthusiastically come for a showing of Frozen, or an Elmo themed birthday party because we if we are going to be crazy enough to live in Afghanistan, then we’d better stick together and have fun! We have Afghan friends who say “how can I help?” and old grandmothers who stuff him with sweets and tea and pinch his cheeks like every other kid on the street.
3) We have our little routines and rituals. Stuffed animals that have more miles on them then most cars, criss-cross oceans and make whatever bed we are sleeping in safe and familiar. We bake sugar cookies for Christmas in a Muslim country and have a picnic for Naw Roz (Persian New Year) in America. For Jack Jack our routines are especially important to help him understand and navigate his world. We get up and get started with our day at a certain time, home school or public, eat dinner together as a family every night and a Bible and bedtime story with Grandma on Skype or with mom on the cushions on the floor. All the kids are flexible and easy-going so we don’t have melt downs if something is skipped or out-of-order, but we can see how having a few things pinned down in the day makes it smoother for everyone.
Our lives probably look different then yours, but if you are here as a new mom with a new diagnosis, I hope you can see that it’s because choices we’ve made to live cross-culturally, and very few because of Down syndrome.
Happy World Down syndrome Day! Happy Naw Roz too. We’ve a lot to celebrate with spring equinox and a little boy and his whole tribe that we get to be a part of, thanks to that third chromosome.
Our firstborn, Violet, turned 10 this weekend. She marked the occasion by hosting her first friend slumber party. The house was full of super giggly fourth grade girls who were alternately grown up while doing their nails and still little girls when snuggling down with the half a dozen stuffed animals they each brought to sleep with.
Having our baby girl turn 10 has been so strange. It does not feel like a decade has gone by. Do you guys realize that the wee children who graduated from high school in 2004 had their 10 year reunion this summer? I don’t even know how that math works out.
Here are ten thoughts about life in the early 2000s and Violet’s first year.
1) Ten years ago Mr Incredible and I were living in a very tiny apartment in Mesa, Arizona. We had this hilarious, floral print couch and still basically lived like we were in college, eating a lot of Raman and cold cereal. We made the controversial decision to get rid of our land line and to strap our cell phones to our belts permanently. We got internet in the apartment for the first time and had a DVD player and a VCR all stacked up on our plywood entertainment center.
2) “Friends” was in its final season and I was hanging on to “ER” because, I’d started watching in college when George Clooney was young, and I was going to see it through to the painful end.
3) Violet was born six weeks early, and I went from working full-time in an office, training and sending young people to the Kurdish parts of northern Iraq to help with the relief efforts there, to being home, alone with a small infant, that could have no visitors until sometime after Christmas. I was so lonely and bored I watched ever single minute of the extended versions of The Lord of The Rings, with and without the director’s commentary and all the extras. That took about a week and then I moved on to every BBC Jane Austin drama ever made.
4) I had no mommy friends. I lived on my Babycenter.com birthboard. No decision, from what the baby should wear when we took family photos to what I should wear when we took family photos, could be made without thoroughly discussing it with e-maginary internet friends. Looking back, I cannot believe I never thought to find a mommy group with actual people in it.
5) My sweet friend Lisa was just getting into midwifery and had planned to come for the birth at Christmas. Of course, she missed the actual birth but we had the best time together when she did come, after quarantine was lifted. Lisa was with us in Afghanistan, before Violet was born, was a part of my life every year after that until this year when she switched this earthly home for her true one in Heaven.
6) We bought our first digital camera for her birth. We then proceeded to take elevinty million pictures of her doing… well, pretty much nothing. I included in her (first) baby book, four pictures of her looking at our cats from her play mat because I couldn’t choose between her focused or unfocused look.
7) By the time she turned one, Violet had been to England and we were living in Kabul, Afghanistan. Before she turned two she’d also been to Pakistan, Tajikistan and Thailand.
8) Ten years ago, Kabul was in ruins. The airport runway was littered with burned out wreckage of planes from the war with the Soviets and the streets were lined with piles of rubble and bullet-ridden walls. Now, the airport is gleaming (thank you Germany) and clean and even has a luggage carousel. Streets are paved and you have to search to find a pile of rubble amongst the new multi-storied shopping centers and apartment complexes. We are privileged to have witness it’s revival.
9) We were really, really young.
10) In 2004 Pixar released a new movie. Can you guess?
It’s November. I realize I’ve missed the boat on the back-to-school post, but for the first few weeks of school I wasn’t sure if it would be a school-is-great/inclusion post or a diary from the nervous hospital where nice people with pharmaceuticals come and check on me — sort of post.
We decided a bit late in the summer that we were not going back to Windy City, Afghanistan for several more months. We wanted the kids to have the assurance of one place to start and finish the school year so we enrolled Violet and Dash in their classes in our small, hometown Christian school.
This school is not just any school. My parents helped to start it. I went to school there and so did my sisters. My mom has been a teacher there for 30 years. It is a big part of my childhood, my faith and our family. Violet and Dash have gone there when we are in the States and their classmates keep in close contact with us when we are apart. When we were in Afghanistan this past year, Dash’s classmates went out on the playground and yelled and yelled, in hopes that he could hear them.
When Jack Jack was diagnosed with Down syndrome, the school was something I really grieved over, thinking that it was closed to him; that it would not be part of his childhood. Too academic, too fast paced. No way he could go there.
And then, suddenly, we were faced with needing to decide where to have Jack go to school and I was not thrilled with our public school options, but so emotionally drained and exhausted from all the losses of the past year that home schooling wasn’t much of an option either. My mom encouraged us to look at putting Jack Jack in the Christian school, so with some trepidation, we set up a meeting. And the meeting was brief but positive. Yes, we’d loveJack Jack to come. We think it would be great for him and great for the school. But there are no services. No aid, no help adjusting the curriculum. Okay, I’ve been homeschooling, I think I can figure this out and we really do want him part of this community.
I rounded up several volunteers, a different person each day, to help him in the classroom. Parent involvement is a huge value, so there were several moms wanting to help out in the classroom and willing to work with Jack Jack and me.
A friend of our family, who had adopted two kids with special needs later in life and who had recently lost their youngest son, was longing to be back in the world of special needs parenting and so she took on a more official “aid” role for Jack Jack in the classroom.
And then, ten days into the school year, just as we are figuring out things like a potty schedule, how to help him with transitions (he was flat out refusing to come in when the bell rang) and what his learning curve was, the kindergarten teacher resigned. And good friends of ours lost their little girl in a complicated heart surgery. I was devastated on both accounts and my knee jerk reaction was to yank Jack Jack out of the classroom and keep him close, keep all these bad things away from him.
But…all the reasons to have Jack Jack in this Christian school remained. The community we’d built, going to school where Violet and Dash and Grandma are right with him, the prayer and values of our faith, and the fact that his resource teacher was seeing more progress in 30 minutes a day then I’d managed in a year of home schooling… We stayed, but it was a day by day decision for a while.
The classroom was a bit chaotic, but the parents all rallied behind the school, we took turns subbing and volunteering and keeping things as normal as possible for the kids and in three weeks a new teacher was hired. And in those three weeks, something happened. Jack Jack went from being the only kid in the school with special needs, to being a kid in school.
He has friends, kids who consider Jack Jack one of their friends. He does circle time and calendar, chapel and the Pledge of Allegiance. He plays with Dash and those adorable second graders at lunch and gives Grandma a hug and her junior-high class a high-five when he goes by her classroom.
And you know what we don’t have? IEPs. Long, drawn out meetings where battle lines are drawn over services. No pointless testing — I work with his resource teacher and a private reading specialist and prepare his work for the week. I went to parent teacher conferences with a list of all the things he’s learned in last quarter and some ideas of where to go in the next. The principle was pleased, his teacher was pleased. We discussed the upcoming pancake breakfast fundraiser, prayed for each other and meeting over. We would not trade that for all the special ed degrees in the world.
So far I’m zero out of a hundred on all the things I thought were out of reach because of Down syndrome.
It’s been a long time since that cheerful, fun Easter post. I think most people who read this blog know that we had a horrific spring in weeks that followed Easter. We lost a friend and a co-worker in an attack on a hospital in Kabul. I lost a beautiful young friend to cancer two weeks after the attack. Our visa and long term plans for staying in Afghanistan were suddenly in question and Mr. Incredible and I had to rapidly change gears to a different work focus. The Afghan presidential elections was moved to the weekend we wanted to leave for our summer break so we had to leave the country much sooner then we had planned to beat the shut down of airports and roads, which meant we had to speed up the school year, packing and saying goodbyes for the summer. The grief, stress and exhaustion were overwhelming.
You can Google the attack on CURE hospital if you want details and you should definitely watch this clip of Dr. Jerry’s wife, Jan and her grace-filled response to the news. God knows, should I ever be in her place, that is the response I’d want to have.
After leaving Afghanistan in June we took a couple weeks in Turkey for debriefing and deep healing prayer. We’ve been back in Colorado for a month now and I feel like I can look around and not be overwhelmed with culture shock, sadness or feel my heart rate raise if I think about going back. On the advice of some very wise friends and counselors, we are taking a much longer break then we had originally planned. There is now time and space to process, to breathe deeply and to just relax and enjoy life.
I’d like to focus on being grateful, finding joy and adventure in life again.
Like hiking in the San Juan mountains and watching Mr. Incredible and Dash edge their way to waterfall.
Enjoying fireworks in the tiny mountain town Mr. Incredible’s family is from. Jack Jack promptly fell asleep right after they started. Obviously pie is more exciting.
And finding laughter and comfort in good friends (a longer post on this sweet girl coming up)
I think some of the healing process for me is wanting to come back to this blog, to tell stories again and share more of what’s in my heart. Thanks for hanging around with me.
We had a lovely Easter Sunday celebration at our home in Windy City. It was low key and quiet, which was just right, after the tensions and high security stress of the Afghan elections. It felt good to come together with other expats to celebrate Jesus and being together in such an amazing time and place. Here are a few photos of our time together.
A Day in the Life
Our life is not typical. Not even close. Even before Jack Jack came into our lives with his extra chromosome, people would say, if they were being polite, “interesting” and if they were being honest would say, “Extreme and weird.”
And that is just fine with us. Living in Afghanistan, with a young family, is our normal. And this year, my two worlds, Afghanistan and Down syndrome come together in beautiful way. March 21 is Naw Roz, or Persian New Year. It is a glorious time of year right now, spring is in slow, full bloom and it feels right to celebrate the New Year now when things really are new and growing. 3/21 is also World Down Syndrome Day, chosen because the numbers of the date represent the third chromosome on the 21st – trisomy 21/Down syndrome.
Our location is different from most of you reading this. You might find it hard to imagine how our days look when what you see is tanks, shrouded women and poppy fields. I’d like to give you a different glimpse and show you what a day in our life is like.
Mr. Incredible and I are up at 6:30. If we’ve had electricity in the night, there is hot water in the tank for a shower. In the summer, doesn’t matter if there is electricity because the water tank on the roof heats up all on its own. Mr. Incredible is in charge of breakfast. This is because he wakes up verrrryyy sllowwly and it was decided years ago, that for the sake of our marriage he should spend some time alone in the kitchen mumbling at pots of boiling water, rather than trying to deal with kids who cannot find their socks.
I get the kids up at 7:00 and take Jack Jack to the potty. He has been staying dry at night for a while now, so this is a great move forward in potty training. A great thing about our schedule is we don’t have to hurry up to catch a bus or start school exactly on time, so I’ve been taking a longer time with him in the mornings so he can get himself dressed. He struggles a lot with hand coordination, so getting a shirt on over his own head can be frustrating and he’d rather just let me do it. Some days we preserver and he does most of it by himself. The kids make their beds and pick up their rooms and we all eat breakfast together.
We start home school around 8:30ish… sometimes more like 9:00ish… If we start at 8:30 we do a version of “circle time” that Violet and Dash think they are too old for, but love it anyway. We sing songs, do the calendar, Bible memory verse and then they can color or draw until Dad comes to do math. While the big kids do math, Jack Jack and I have time together. This is his focused school time, but it can range all over the place. Sometimes I do shopping lists and he plays on the iPad. Sometimes he follows our house helper, his beloved “Khala jan” around helping her vacuum and dust. I try to make sure he does his sight word flash cards, some pre-writing work with the white board or crayons and paper and we do a few speech therapy drills. His speech and reading skills are a whole other post for another day, but I will say that I’m pleased with what we’ve been doing, but I think we’ve got some pretty big holes that need addressed.
After an hour of math we all take a break outside. They all have chores to do too and Jack Jack’s is to help feed the rabbits and make sure all the shoes are lined up neatly in the entry hall. Throughout the day he is called on to help set or clear the table, hang up laundry and pick up any toy messes that he makes.
Jack Jack hangs out in the classroom for the rest of the morning. Often he sits on my lap at my desk and we do
handwriting or education apps Facebook and Pinterest on the iPad while Violet and Dash work on language arts assignments. When one of them is done, they will play games, do flash cards or read stories with him. At 11:00 he is allowed an Elmo or Curious George DVD. He is only allowed them at this time of day, but that doesn’t stop him for asking for “Emmo George, Emmo George” all.day.long. We have lunch together – often Mr. Incredible is home in the afternoons and then leaves for his teaching job in the evening. We do Dari lessons, quiet reading and bits and pieces of school that didn’t get done in the morning and finish up the school day with a snack and a Read A Loud book at 3:00.
The favorite time of day is 4:00 when our team mate kids are finished with their day and all seven kids can play together, running between our houses, which are connected by a wall and a gate between the yards. Jack Jack is a full member of this little tribe. He is included in the games with the bigger kids, but also sits and plays baby dolls with Joy, the youngest of the group. Often Afghan neighbor kids are around too and have gotten good at understanding his sign language and will push him on the swing or chase him around. If the big kids have run off and are too fast for him, he is very happy to find his “Koko”, which means uncle. Koko works in our yard as a guard, gardener, handy man and gate keeper. Jack Jack is happiest when he’s helping to sweep the dust or shovel the snow, polish the motorcycles or water the grass.
Violet and Dash have different days where they are assigned to help in the kitchen, and Jack Jack is usually included, unless I’m seeing the big kids needing some one on one time with me. We do some baking in the afternoon and start dinner around 4:30 or 5:00. Jack Jack loves to stir, measure and pour and of course, lick the spoon when we are done.
Again, showers for the kids depend on how much hot water we’ve ended up with by the end of the day. I clear up from dinner and the kids get ready for bed. Jack Jack gets a story or two that he picks out and a Bible story from his “Jesus Story Book”. Then he snuggles with me and we listen as Daddy reads out loud from the Chronicles of Narnia. Jack Jack falls asleep before the story is finished and we carry him to bed at 8:00, ready to do it all again tomorrow.
So, what do you think? Is it like you pictured? There are days I truly mourn the lack of speech therapists, special education teachers and great resources that I see other kids with Down syndrome in America getting. I worry if I’m doing enough or good enough. Every day I miss my family and our friends who helped and held us up those years when we didn’t know how we would ever have both Jack Jack and Afghanistan. But, in the balance we have this amazing, untypical, extraordinary life that is on a day to day basis the most normal kind of day anyone could have.
Click here to read more great blogs on a “Day in the Life” of someone with Down syndrome
We live in the heart of Windy City. As someone who will not drive here because of the terrifyingness that is the traffic, not to mention the minor fact that somehow I managed to get to adulthood without learning to drive a stick shift, I like living in the city. I can walk to where I need to go and there are plenty of taxis to take us further than Jack Jack’s legs can go. Our corner store sells diapers, juice and tuna fish, and just a few more blocks away are larger stores with ketchup and frozen chicken breasts (the essentials, obviously), vegetable and fruit sellers, pirated DVD stores and if ever I’m so inclined, a butcher’s shop featuring that day’s selection of goat heats.
However, my world is pretty small these days. We do home schooling and living in the couple of rooms we keep heated and the kids play in the yard with high walls all around. Going out takes a ton of effort in getting all the layers of clothes on, figuring out how security is in the city that day and it’s usually a quick trip to the store, or a day at a friends house, with the same sorts of high walls.
So it felt very special to go outside our neighborhood to the outskirts of the city where friends of ours have set up their home. They are from California and work with local farmers in food processing and agriculture business. They are some of the coolest people I know.
The only other people in the apartment building is the landlord and his family on the second floor. The fourth floor is still under construction, with no windows, doorways and access to the roof. We had a tour of the building and then sat down to eat lunch. We were happily visiting away when I noticed that Jack Jack wasn’t with this brother and sister, playing iPad. It took only a few seconds to realize that he had slipped out quietly and was no where to be found. With my heart in my mouth I yelled for Mr. Incredible to run up to the fourth floor to see if he was exploring. I could envision him running through open doorways and balconies with no guard rails.
I dashed downstairs and met the landlord on his way in. Now, normally, I’m very indirect and reserved with Afghan men, but this time I stared right into his face and practically shouted at him in mixed up, frightened Dari, “have you seen a little foreigner boy? A little boy with glasses?” He said no and was immediately concerned and joined in the search. I was just about to dash out and search the street when the door opened and the landlord’s son popped his head out. “I have him, I have him” he called out and sure enough, there was Jack Jack, sitting in their living room. The Afghan kids were bemused by this little blonde boy and were having a great time with him. Obviously they knew he belonged to us and hadn’t seen any reason to bring him back upstairs.
Our hosts and Mr. Incredible thanked the neighbors while I held on to Jack Jack and had a little melt down. Got over that and after a bit the boy and his sisters came upstairs and had a great (supervised!) time playing together with my three.
I really enjoyed the day out, walking in the quiet streets and seeing my kids interact so well with Afghan kids. This is something we’ve really been praying for. But reliving those frightening moments when Jack Jack was missing makes me grateful for our high walls and closely guarded gate at home!
“Not just survive, but thrive” is a phrase we say a lot around here. Culture shock, home sickness, spiritual heaviness all hit hard after the initial high of moving cross culturally and it’s easy to hunker down and just live for the next break out of Afghanistan.
We were definitely in survive mode only a few weeks ago. Cold weather moved in to stay for a while and the logistics of life gets much more difficult.
Our house is a lovely mud-brick home with thick walls but very high ceilings which make it hard to heat. So, like our Afghan neighbors, we mainly live in two rooms that we heat with wood and sawdust. The bedrooms and big hallway and bathroom all stay around 55 degrees so it takes some courage to get out of the warm living room to take a shower or go to bed. Mr. Incredible spends a good deal of his time lighting and maintaining our stoves and threatening dire consequences to the next person who leaves a door open.
We get electricity every third night, so I start cooking dinner early, knowing that by 5:30 I’ll need a headlamp to see if the ground beef is browned enough. Electricity is erratic during the day, but usually strong enough in the mornings that I can get a load of laundry done — if the pipes aren’t frozen. The electricity we do get is often so weak that we can’t pump water to the roof, so rationing and conserving water becomes my main concern. I’ve yet to be committed enough to washing dishes to go out and melt snow.
And my favorite quirk of living here? With low or no electricity and an unheated kitchen, the refrigerator becomes the place to store things you don’t want to get TOO cold and items you want to stay chilled are left out on the marble counter top.
Dressing in lots of layers to go to bed, seeing your breath in the office or waiting two days for chicken to defrost — these are things you can plan for and get use to.
But, it wears us down. And so, once a winter we try to get away, to warm up and gain perspective on life in Afghanistan. It wasn’t easy. I can’t yet write about our favorite restaurant in Capital City that was blown away while we were on a beach in Sri Lanka. Still looking for those words.
But I will write about it and about the trip to Sri Lanka. I’m trying to get into the habit of posting more. I miss it and it’s one of the things that will help me thrive here I think. Because that is what I want to do. Thrive and enjoy life here and be a part of something bigger than myself, bigger than my comfort levels. So, stay tuned. Next post may feature monkeys. And not just the kids.